If you have read earlier posts from me, you'll know everything that's been happening with my sister. Basically, she found out she had lupus, and had many hospital and emergency room visits. But now she is doing great! She is back to work, and going to start going to college again. But the most unexpected thing happened to me the other day at my doctors appointment.

I went to my doctor about my chest pain, and the doctor assumed it was just stress related, or anxiety related.. until something came up abnormal in my blood test. So they scheduled me with another appointment 4 months(which was just 3 days ago) later, so they could figure out what was going on. So the first thing that my doctor said to me was that he was not happy with my test results from my past blood test. He mentioned stuff about my ANA and other stuff (huge words I can't remember) was extremely elevated, and pointed out that my fingers were discolored.
My doctor also said that 7 years ago when I had Kawasaki Syndrome (an autoimmune disease related to inflammation of my heart vessels that can be treated and go away) he was pretty sure that I was diagnosed with the wrong disease. The main thing that pointed this out to him was that Kawasaki Syndrome is usually only common in infants... not children who are 10 years old... and he thinks it was another sort of autoimmune disease. My doctor told me that what ever the auto immune disease is, my test results show that I still have it in me. So at this point in the appointment, of course I'm starting to get a little nervous, about what he's going to say to me next. Basically, my doctor told me that since it wasn't Kawasaki it has a good chance of being lupus. I have started to get used to dealing with my sisters lupus the past 2 years, but me having lupus all of the sudden? Since my sister got diagnosed, It has never even crossed my mind that I would ever have lupus also. That day, he took more tests to figure out what exactly is going on. So it isn't official that I have particularly lupus. Its either that or some other new autoimmune disease I have never heard about. But I am still sort of shocked at the fact that I may have lupus.

My dad told everyone the news, and I told my mom... and pretty much everyone in my family is really concerned about me. I'm worried also, I'm not sure how or where I would even begin if I got lupus. Dealing with my sisters lupus was extremely difficult, coping with it was hard, and getting used to it for everyone in our family was not easy. I can't imagine making everyone in my family readjust to me having lupus. We just got Kc's under control, I would hate to go to the hospital, and have never liked the emergency room. I'm kind of freaking out right now about everything, mainly because this came up really fast. I'm not sure what to do, or what to tell my friends or family if I do end up having lupus.

But, thankfully.. the doctor has not said anything about me showing lupus. But the previous test results point out that there is some sort of autoimmune disease in me, whether it be lupus or not. I would rather it be nothing at all, but that's not going to happen. I'm really worried and scared about what’s going to happen to me. And I'm sure my parents are also. I haven't mentioned anything to my friends, because I don't want to tell them anything until I know for sure what’s going on.

God, please help me...

Sincerely,
CJ

steve.b

05-14-2012, 07:46 PM

cj,
remember what we said when you first came here.
today with good medical treatment, lupus patients can live a normal life.
somethings may need to be adjusted......
but life can go on.

your sister is starting to show this in her life.
hopefully it is something that can be controlled with medication.

tgal

05-14-2012, 09:24 PM

Many people who are diagnosed with one AI disease come to find out they have others. The good news is that the treatment is often the same. As Steve said, lupus no longer has to be a death sentence so try not to panic. If it is lupus then it is good to know so you can get on the right meds before it gets bad. Try and relax. No need to "borrow trouble" and worry about things that have t happened yet.

We will be here for you

SleepyInSeattle

05-15-2012, 08:08 AM

It sounds like you have a really good doctor who is on top of things and determined to get you on the right track BEFORE things get bad - that's an incredible advantage!!!! AND your whole family knows how to deal with autoimmune issues - ALSO a huge advantage. So, in a way, if you have to deal with this, you are in the perfect situation for it.

Sounds like you are pretty young - I'm gonna' pull the "old-timer's" thing on you and just say that as you go through life you will see that EVERYBODY has some issue they have to deal with. Look around you....some people have lousy families, some people have horrible trouble with schooling that puts them at a disadvantage their whole lives, some people get injured and have chronic pain, some people have diabetes, etc - autoimmune issues just may be your 'THING'.

As people here have mentioned - lots of people have Lupus and a host of other issues, and live pretty normal lives. None of us like it, and most of us struggle with having to take medications, moderate our expectations, etc....but you get used to it. Nobody gets through life without burdens. Especially since they are catching stuff early and you have an informed family, you might avoid a lot of the damage that many of us have before we ever even got diagnosed. That alone may save you a whole lot of pain and grief!

Also, I bet that since your family has already adjusted to your sister's Lupus, they will be a bit calmer in dealing with whatever you may or may not have. And remember that these diseases are different in EVERYBODY - even if you have EXACTLY what your sister has, it won't look or act the same way in you that it does in her.

It is very, very hard to wait and not have answers - believe me, I am the WORST about that stuff. I sit and worry and I want answers right now and I just about jump out of my own skin I get so anxious wanting to know what is going to happen to me. So I really do feel for you....all I can say is that it helps me to deliberately think about the bright side of things rather than the darkness.
- You have a good, proactive medical team,
- You have an informed, supportive family and are not alone,
- You have a wealth of information and support on-line,
- You're not in the hospital yet, and may never be,
- You are getting good care BEFORE damage happens, not playing catch-up after the fact.

Just try to breathe and let your family and doctors take care of you. It will unfold however it unfolds....

And of course come here for support!!! We understand....:)

siege929

05-15-2012, 03:08 PM

I have been doing my best to stay calm, and try to look on the positive side. But as you said, it can drive me crazy not knowing what is going to happen, or what the doctor will say. He said that he would call if something came up in the blood test, and probably put me on a medication that is supposed to prevent or calm down autoimmune diseases. He hasn't called yet, and its been a week, so it can't be too bad can it? I do realize how lucky i am to have a supporting family, and support from WHL also. I don't know why I'm so worried about this, because since my sister starting seeing our new doctor, she has only improved and gotten better. I hope that since it is early on in what ever I have or don't have, that it won't affect me as much as it did my sister.

Thank you for all the help guys, I'm glad i have a lot of people who know what I am going through.
Although i am still really nervous about what is going to happen...

(by the way, I'm 17 years old) ;)

Sincerely,
CJ

LenaT14

05-15-2012, 04:33 PM

Hey there, this can be very overwhelming. If I had someone to give me advice very early on it would be this: 1 stressing yourself out is the worst thing you can do for your health so try to stay calm, 2 don't do too much research about an undiagnosed issue because you will only freak yourself out more, 3 like someone else mentioned, even if you do have the exact same diagnosis as your sister you may not have one tiny similarity in your symptoms because everyone is very different. My mother and I were at the rheumatologist office yesterday unknowingly at the same time, the genetic thing can certainly play a big factor but we have totally different symptoms and are on totally different treatment paths.....it was like a circus with us bickering with each other and the doc in one exam room, that poor guy couldn't get away from us fast enough! Best of luck, take a big deep breath and please keep us posted! CTR